tpotter

Does he take melatonin. That could be it.

I completely agree with Philamom. Personally, I think this all goes back to lets just be scared of using abx, and prescribe psychotropics instead, AND lets just have 1 in 50 kids diagnosed with an "incurable" disorder that totally disrupts an entire family (incidentally that number was 1 in 144 just 5 years ago). I know multiple children who were diagnosed with Autism who turned out to have PANS (one infection or another plus other biomedical triggers.) I don't put one bit of credibility in this article. My DH was the only one in my family who tested positive for Lyme, but both my children and I also turned out to have it, and responded to the "dreaded" abx therapy.

It's about time.

In our case anyway, we have other known conditions, IE autism, that we needed to run some tests for as well. Not all her tests were for are for PANDAS. We also strongly suspected that she had PI, but we needed the blood work to back that up. As it turns out, we found out she has some kind of kidney disease that was not even on my radar and I doubt it was on the docs since he never discussed this at all, so that was a good thing we discovered since the sooner you treat this, the better off the child will be. I have seen Autistic kids get better by being treated for PANS (including my own son...social skills jumped 7 years overnight with IVIG). Also, what is the kidney disease, because strep can cause glomerulonephritis (which is a kidney disease caused by strep).

WOW...what an incredible teacher. Cyber hugs to her!

I cannot speak for tufour, but my concern with IVIG is that it is a blood derived product and as such would be a very last resort for us. Kiddo's doc has already recommended it at the first visit even before we found she has PI. Now, we also find she had kidney disease of some type, which makes IVIG even a more distant possibility for us. It seems IVIG helps some and does not help others. Also, from my limited understanding, the chance of success is far greater if you have other infections under control before beginning IVIG. I haven't tried it yet, but am strongly considering, but what about trying camel's milk. It is said to work like IVIG. You can research it online, and there is also a facebook page (it's a close group...you have to apply to be accepted) https://www.facebook.com/groups/225663314116369/?fref=ts. Just another thing to consider.

I agree that you really have to follow your gut...and speaking of gut, please make sure you are also supporting your gut with a really good probiotic or 2. The top specialists in the field (including Dr. C and Dr. S, have noted in their speeches that the gut is the 2nd brain. One of the things we are now trying is to modify our diet. I have already started, and boy am I feeling a lot better. Much harder for my 20 yo DS who had a meltdown earlier over it (giving up the inflammatory foods, such as sugar, gluten and dairy, and making his diet less acidic is, justifiably a SCARY thought.) While it would be wonderful to not have to take that much abx, the reality is that there really is no choice. These doctors just don't get the fact that without it, our children are even scarier than all the abx they are taking. BTW, heard a news story the other day about all the kids who are getting allergies (much worse than when we were kids.) They are trying to blame it on too many abx (the crazy thing is that the use of abx has DECREASED overall from when I was a kid (we used to get it at the drop of a hat, but now we have to fight to get it even when our kids test POSITIVE for infections!) Of course there's no way they're going to blame all the junk that's put into foods and the air, and of course tons more immunizations that are specifically designed to modify the way the immune system functions. Just thought I'd throw this out. But, personally, I think you're doing the right thing, and I would suggest you just keep doing what you feel is necessary for your chlid. You, of all people, know your child better than any of these doctors do.

If it hasn't been tested already, I would be testing for other infections, such as viruses (Parvo, HHV-6, HSV, Coxsackie, EBV, etc.), mycoplasma and other pneumonias, lyme, bartonella, babesia, erlichiosis for starters. Sounds like she is definitely sick with something.

Could the strep be in his stomach? Does he have stomach problems?

My DS has the seizures, and was in horrendous condition, but definitely has underlying infection. I have not had him tested for NMDAR, but seeing as it is now a blood test, I will ask his doctor. He's doing well with abx, chiropractics, supplements, ART, but not quite there. He has also had several rounds of IVIG, and one PEX. Just curious...what happens after she runs out of her $1 million in treatment? Isn't that the max her insurance will cover for anything?

OK guys and gals...what is CBS?

Yes, pollen/allergies are bad. Also, lots of mycoplasma pneumonia here on the east coast I'm seeing (I also have been re-exposed to it.) Given the symptoms of raging, I would rule out mycoP, bartonella and babesia.

Just curious who is Dr. O? You can PM me.

DS's first really major flair (ended up in the hospital, ) as nystagmus like you're describing, only he couldn't stand, because he was so dizzy. Turns out he had scarlet fever. Sounds like possible chorea and/or tics.

2 - 4 months? Mine has already been 2 years.

But, at least she realized it was going to be a long time. I would definitely try to find out who she is. Sounds like she definitely "gets" the whole thing

Absolutely. I would think it would be WAY more expensive to get them in 6 pill containers at a time. Also, it's available in generic (azithromycin)

Wow. 40 lbs. That's amazing. I'm hoping that with DS home for summer vacation, I can convince him to stick with the "diet" (I'll do lots of prep at home, but he likes to take himself out to eat. But, I do think he's tired of feeling so awful all the time, and maybe I can convince him. Doesn't sound like many people do the full GAPS protocol. Personally, I think if we eliminate gluten, dairy (he's already done that, because he was able to associate it with stomach bloating), and sugar, we're going to go far. Unfortun. DS doesn't remember how badly he felt when he feels good, and v.v.

Ummmm. I guess it's that Italian cooking I know so little about (but, boy did my son love it when we went to Rome last year (I'm GF, DF, and tomatoe free, so I couldn't eat it)

How did your doc decide on the 4000 mg of Valtrex XR? Is there a specific protocol? My LLMD prescribed 1000 mg of the regular valtrex (1 g daily).

Thank you. We've had doctors tell him for years that he needs to fix his diet, but that's been the biggie. He eliminated dairy recently, because he finally recognized it was bothering him. He eats way too much sugar, but also eats a lot of meat. We were all on GF, dairy free, sugar and yeast free diet for about a year, and he was doing great. Then he started eating all the stuff again, and recently has a HUGE problem with sugar. We stopped seeing the doc who was helping him the most last year, because the doc had told him that he was wasting my money...the supplements wouldn't help if he didn't clean up his diet (the doc was right.) Anyway, my DS decided not to stop with the food, so he's really struggling. He's away at college, and even when he was at home, I couldn't force him to eat properly. I'm just hoping that while he's home for summer break, I can convince him that it's not so hard. He really does like meat, fish and nuts, and used to eat a lot of veges. I figure I can get him to eat them again, if I serve them on his plate. What is "homemade spag bol" that you mentioned above?

What was the dose of valtrex he took. That is good to know...exactly what I want to know. Also, how long was he on the valtrex?

ART suggested the Vit. A protocol, but wasn't adverse to the valtrex...just said not to do both together. LLMD gave me the valtrex (but it's not as high dose as what t-anna is doing. I wanted to see if anyone else is having any success with the valtrex, otherwise I'll just stick with the Vit. A. I've been on the abx for 2 years (azith the entire time) and have changed up the others. My IgM for MycoP went down from 1750 to 1100, but now is back up to about 1300, and I am symptomatic. Plus, apparently, coxsackie can affect the lungs, too.

LLMD gave me script for valtrex for Coxsackie and Parvo (IgM is high on both) that won't go away. I also have chronic problems with MycoP for the past 4 years. IgM never went completely back to normal, but now is going up again. Has anyone used valtrex and found that it really helped? I don't know if that's I already take 100 mg doxy twice a day, azithromycine 250 mg twice a day rifampin 100 mg daily My pulmonologist has absolutely no clue what to do for chronic mycoP (tried to tell me it doesn't matter, since I've had it for years, but when I argued, he gave me the phone number for National Jewish Hospital in Denver, and told me to call them)...That's another question...anyone have any experience with them, or is it just running in circles again? LLMD is really not sure where to go from here, because I am already on the abx that typically work for mycoP. A super high vitamin A protocol has also been suggested for the viruses, but I was told to do either the valtrex or the vitamin A protocol. I'm very frustrated, and feel so miserable. Any suggestions would be very welcome. Thanks

Has anyone tried the GAPS diet? If so, what did you think about it? Do you think it helped, and how difficult was it to maintain? Any other diets that people found really, really helped heal the gut?